Two Little Letters

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Paddington Bear - Charity Mascot in Costume

In this language we make such a fuss of four letter words.  Perhaps that’s why swearing is associated with limited vocabulary, we learn three-letter words from Peter and Jane along the lines of cat and dog and mat and then we graduate to four letters.  Some people stick there.  Despite the bad press of four letter combinations, there are worse things, smaller, fewer letters.  There are just two little letters in my life, just two little ones, that make such a difference, that have changed such a lot.  It’s a slightly ironic pairing, you’ll have to admit, when you find out that my dread enemy is ME.  Just two little letters, they mean so much by their effects and yet mean so little to so many people.

I’ve tried not talking about it, I’ve tried being ‘strong’ and I’ve tried ignoring it.  ME is still with me.  Just two little letters but they follow me around like some mangy flea ridden mongrel, not exactly my choicest companion and not exactly welcomed by others either.  Now I have a stick it has become a little more obvious that I am being followed, a bit like Paddington leaving the bacon in his suitcase.  My stick is my bacon (vegetarian of course) and people want to know why it’s hanging around.  Maybe it’s the smell.

So I have to ‘fess up.  Sometimes I’m a little embarrassed, other times I even feel a little guilty because I know that so many of the people around me have real, genuine problems.   And ME?  Those two little letters?  Well it may be a real condition but most folks don’t believe in it, especially those who pride themselves on their expert status.

It’s just two little letters and it doesn’t mean much to people.  I get the polite ‘oh’ of acknowledgement but I don’t know whether to take it further.  Are people interested in knowing more about my enemy, ME?  And what would I say?  I don’t know, I know it’s real because I live with it and if I had a choice, I could be doing a lot more with my life.

Other times people suddenly look highly sympathetic (strangely it’s a similar tone to that of uttering condolences in some tragic circumstance).  I get a little suspicious when I get that reaction.  I know which two letters I’m talking about, other people don’t.  They nod knowingly and may say something about the condition or things that they’ve heard, mention a friend we both have in common who has the disease.  I know then that they’re talking about something very different.  They’re just a letter out but it makes a big difference.

I don’t have MS.  Everyone knows about MS.  MS is socially and medically acceptable, a worthy cause for sympathy.

I have to shake my head and tactfully explain that I have ME, two other little letters which still have a huge impact on my life.  Just not in a way that anyone seems to understand or appreciate.  I try to explain but I don’t have a polite off-pat introduction for my mongrel friend of two little letters.

Apparently I’m meant to be envious of those who have that other two letter disease.  If envious is wishing myself in their situation then I’m not.  I wouldn’t wish MS on anyone and I’m too busy dealing with ME, two other little letters which are a life sentence, myself.  Perhaps at times it is easy to be envious of the position of MS sufferers, of their status in society.  But that’s not really something I do think about anyway, I certainly wouldn’t dwell on it.  My two little letters keep me busy elsewhere, trying to just do the basic everyday things.  However personally, I think it would be a lot easier if MS was the two letter friend that I had to introduce.  It would be quicker too and I think that I’d probably get a lot more understanding and support, which does make me sound like a very pathetic, attention-seeking loser.  I’m not looking for sympathy though, I’d just appreciate it at times if there was a little bit more understanding of the beast that is my two letter friend.

It’s hard going about with a stick, it is a mark of shame when I think of all the problems that my friends and acquaintances are struggling with.  Who am I to complain?  There are people who I’ve known all my life that I’m now being forced to explain that I have ME and that it’s no new thing.  Half my life, you would have thought the bacon would have decomposed by now but no, still got my faithful mongrel-beast following me around and lowering the tone.

I was with my mother the other day when we bumped into one of her friends.  Who has of course known me since childhood.  Everyone assumes injury at first, I’m not quite sure of the logic of such conclusions but who am I to regulate the logic of the human mind.   She asked of course about the stick after which ensued a conversation much like all the others related above.  I ended up saying that I had had those two little letters ME in my life since I was a teenager.  (I was tired, a gleeful, impish, trouble-stirring streak had taken over).  She, perhaps quite rightly too, then demanded why nothing had ever been said about it before. My mother, already embarrassed by the stick-wielding, hat-wearing idiosyncrasy who was accompanying her but that she still persists in being related to, was slowly sinking into the floor and manage to stammer out ‘well it’s not the kind of thing you talk about’.  I am a guilty secret.  Because of two little letters.  It is a particularly malodorous mongrel, the kind that not even a tramp would welcome at his heels.  Just as well Depression doesn’t take to needing a stick was my final thought on that conversation.

ME is something that I learnt to hide but it still surfaces.  And when it needs a stick there is no escaping.  I am out.  But I still don’t know how to explain my mongrel friend.

 ~

I have been reading some new information of ME and am still struggling to process it.  But there’s a very interesting chart about the whole MS v ME thing which is either illuminating or scary, I haven’t yet decided.  And if anyone reading this has an off-pat introduction for my two lettered mongrel-beast then please share!

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29 thoughts on “Two Little Letters

  1. I am living with a rather more common ME for too long (myself). It’s both crippling and a stick. Sadly, I have used it to hurt people. Your writings have a healing effect. I look for them.

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  4. Cutting and pasting my one-minute introduction:

    “Myalgic Encephalomyelitis. It’s a neurological illness that has left me bedridden since 2007. It affects pretty much all body systems, and it feels like having the crushing exhaustion of mono, the all-over body pain of the flu, the noise/light/sound/smell sensitivity of a hangover, the weakness of having just worked all your muscles to failure at the gym, and the unrefreshed feeling of not having slept for a couple nights no matter how much you sleep, all of it constantly. No cure, no FDA approved treatments, and it’s infectious (sometimes there are even epidemics), but nobody knows for sure what causes it. It affects one million people in the U.S., 17 million worldwide. And last year the federal government spent a grand total of $6 million on research…probably because the CDC renamed it ‘chronic fatigue syndrome’ in the U.S. in the late 80s. People think it’s made up. Does this muscle wasting look like it’s all in my head?”

    And of course MS was once thought to be hysteria too. Our day will come.

    • Ah, if only I had the energy to have hysterics! (Body clock is up the creek again so it is very, very late here now) Nice one, I like that too. Thank you very much for sharing and for visiting. :)

  5. Wow, it’s buzzing in here today, IE! I don’t know a lot about ME: it sounds arsuous, day after day, and your Mum’s reaction is soul destroying.

    But coming here day after day I guess I can say that the two letters don’t limit you in here. Here your mind has full range. I love to come here and read.

  6. For starters, when encountering idiots, try using the full name: “I have Myalgic Encephalomyelitis.” Just that should be enough to create an intimidating silence, into which you can insert a brief explanation, and a context they will be familiar with: “It’s an acutely acquired neurological illness with systemic effects initiated by a virus infection–there are similarities to polio.” While they’re digesting that, you can add, “I’ve been living with it since I was a teenager, though most people don’t know that. Lately, I’ve needed more help walking, hence the stick.”

    That website you gave us, by the way, is a great resource–thank you!. You can direct people there if anybody really wants to know more. And I think that promoting public awareness, like you’re doing with this post, is a good way to set the record straight. Instead of going on the defensive with the misinformed about whether it’s a “real” disease, just present it AS a real disease, because it is! There’s a linguistic trap in doing the former, because any denial of a lie tends to reinforce the lie–there’s an interesting article about that here called “The Persistence of Myths”:

    http://www.washingtonpost.com/wp-dyn/content/article/2007/09/03/AR2007090300933.html

    And as for your mother, I don’t suppose it’s practical to hit her with your stick…is it? Maybe, if she’s just culturally trained to the stiff-upper-lip, as opposed to being intentionally cruel, you can help her find a better way to handle it by your example. In fact, you can take advantage of the stiff-upper-lip bias when people demand to know why they haven’t been told: “I don’t like to whine, especially since there’s really nothing to be done about it, but I do appreciate your concern and understanding, and your patience when I seem a bit slow or worn out.”

    And if they still respond badly, perhaps you could just poke them a little with your stick, to get them out of your way.

    :-)

    • You are a genius! I think both me and speccy will be borrowing your intro or do you have copyright?! Thank you ever so much.

      I find the stick is very handy for getting my mother’s attention at long distances but other than that I suppose I’d better be a good daughter (O:)) and not risk more!

      I don’t usually get into the real/not real discussion verbally, this post was just a bit of a sounding board today.

      The Barbara Sullivan technique will be adopted as of today, right, now to find a victim! :D

  7. I don’t need the stick everyday, but am always self concious when I do. In some ways, though, I find it makes things ‘easier’; well there must be something actually wrong with me if I need a stick, mustn’t there? Nobody uses a stick just because they feel a bit tired.

    I have nothing to explain the brain fog and cognitive difficulties. My concern about my voluntary work is that I do it when I’m ok- not everybody knows that’s not how it always is, and I’m wary of raising expectations. My mother didn’t really understand it, but she did tell people. I don’t hide it, but it’s not usually part of my introduction either. Why should it be? I don’t want to be defined by it.

    It’s a hard one, especially with such a misunderstood condition. i do hope you get some ‘off pat’ definitions that I can use too :)

    • If I do, I’ll gladly share the intro but it’s definitely the stick’s fault. I don’t want to be defined by it either but I do feel it’d be helpful if more people knew ie understood. The ups and downs are hard to manage, I’m glad that you have some voluntary work for your good days, it’s nice to have something to do, somewhere to go, to be of use. Keep well. :)

  8. My husband’s niece has a condition – it’s one of these ‘hard to diagnose as hell’ things. It causes her chronic fatigue. It also makes her heart race sometimes when she just stands up, not even too quickly, so that she’ll get up and pass out. It makes her vomit. So far, her diagnosis stands at POTS (I forget what PO stands for but TS is tachycardiac Syndrome). She’s seventeen and a straight a student. She can’t go to school. She can’t sleep in her own bedroom (upstairs, danger of falling). And if she has a good day, my sister-in-law is apt to take her out to lunch, so that the poor kid can get out of the house.

    The looks they get.

    The judgmental assholes.

    It’s similar to what you’re going through, but she’s surrounded by family and friends who absolutely believe her, who know that even if she LOOKS ‘just fine’, she’s absolutely NOT just fine, and that she needs understanding, support, and love.

    And so do you.

    • Aw, bless your cotton socks. My heart goes out to your niece in law, POTS can be part of the glorious package of ME so I have heard of it and I think the PO is Post Orthstatic, it’s do with standing up. Thank you for your ongoing encouragement. :)

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